Susan Liuzzo faced an agonizing choice many families dealing with Alzheimer's disease confront: keep her 84-year-old mother at home or move her to an assisted living center for round-the-clock care.
Her mother had become a danger to herself. She forgot to turn off gas stove burners and microwaved metal silverware.
So Liuzzo moved her mother into The Haven, a north Charlotte assisted living community, and agreed to pay $5,600 a month, an amount she figured would cover food, room and board and nearly every other expense.
Liuzzo soon learned she was wrong about the cost.
Under an agreement, Liuzzo had to buy her mother her own bed, pay extra for staffers to push her mom in a wheelchair and put down another $300 a month to give her an increase in medicine.
The added costs totaled more than $13,000 a year, documents show.
"They didn't even give you sheets," said Liuzzo, 59, of Huntersville. "No sheets, no comforter, nothing."
Assisted living centers serve people too ill to live at home, but not sick enough for a nursing home. The centers, which typically offer meals and apartment-style rooms, let residents live independently while getting help with basic activities like taking medicine, bathing, dressing and eating.
Even critics acknowledge that assisted living centers can provide high-quality care and offer a vital service in a society with a growing elderly population.
But the industry's billing practices have come under scrutiny from families, consumer attorneys and a North Carolina lawmaker who is proposing new protections for residents.
With little government oversight and few legal protections, they say, residents and families are vulnerable to exorbitant pricing and manipulation.
"There are loopholes in the system right now, and I think that the facilities are taking advantage of that ... and they're taking advantage of those seniors," said state Rep. Scott Stone, a Mecklenburg County Republican.
Stone said he plans to introduce legislation this year requiring standard rules for when assisted living centers can charge residents extra for services.
The Massachusetts-based company that owns the Haven operates more than 270 assisted living centers in 30 states, including 20 in North Carolina. Five Star Senior Living did not make company officials available for interviews.
In a written statement, the company refused to comment on Liuzzo's mother's bills and said its billing practices meet industry standards.
"We offer a variety of services at different price points and remain steadfast in our commitment to providing the highest level of care for all of our residents," the statement said.
Centers typically bill residents one of two ways: Either an all-inclusive price that covers all services or a pay-per-service basis.
Charging by service can include extra fees for help with bathing or showering, dressing, grooming or managing continence.
Facilities charge added fees because those services may require extra staff, equipment and other items that carry costs, said Rachel Reeves, spokeswoman for the National Center for Assisted Living, an industry trade group.
"It's friendly to consumers," Reeves said. "Most people don't need 24/7 round-the-clock care. Instead of saying you pay for everything, it may save you money because you can do some things independently. It gives you more wiggle room."
Sheryl Zimmerman, a professor of gerontology at UNC-Chapel Hill, said assisted living communities typically furnish residents' rooms with a bed, dresser and chair.
But centers sometimes leave rooms bare because there has been a movement to allow residents to pick their own furniture and decorations. "Some people want to personalize their settings," Zimmerman said.
Zimmerman said other suggested reforms for assisted living centers come with downsides.
For instance, she said, there is a near-universal agreement that more staffing and lower employee turnover is needed. More staff — which often represents the center's biggest expense — could, however, mean higher prices for consumers, Zimmerman said.
'Everything is going to cost you'
Liuzzo's mother moved from Florida to live with Liuzzo in Huntersville in 2010 as her health began to fail.
She broke her hip in a fall and she had a stroke.
By 2014, Liuzzo said the effects of Alzheimer's had grown severe. Eventually, her mother didn't recognize her.
“She did not know who I was. That’s the day I feel like she died to me,” Liuzzo said.
Liuzzo filled out forms and took her mother for required shots. “You’re so frazzled taking care of your mother," it's difficult to understand everything you need to know, Liuzzo said.
Her mother had saved money for the latter years of her life. She paid for long-term care insurance, which typically reimburses policyholders for services that assist them with daily living activities such as bathing or dressing.
So Liuzzo decided to use the money to pay for care at an assisted living center. Just eight months into her mother's stay, the facility charged her an added $300 a month for complex medication administration and $900 for the second-highest "level of care."
"The cost of care to have a sick parent is astronomical," Liuzzo said.
After receiving bills for her mother's supplies with rubber gloves costing $10 a box and pull ups costing $20 a pack, Liuzzo instead bought her mother supplies at a wholesale store to save money.
But the biggest hits came in the additional monthly charges for her care.
At The Haven, the cost is determined by a point system. The "Level of Care Pricing Program" charges more "based on the amount of staff supervision or assistance required to perform the service," according to the facility's resident agreement.
At the highest end of the point system, patients pay an extra $300 a month for medication administration and $1,200 a month for other added care, according to the 2014 resident agreement outlining the Alzheimer's program's fees. That totals $18,000 a year above the $67,740 rent.
Federal insurance programs and health insurance do not typically cover assisted living costs.
Liuzzo said her mother's long-term care insurance policy contributed about $4,500 a month to help cover the cost. The rest of the cost was paid with money from her deceased father's retirement and savings. Liuzzo's mother's stay usually cost about $7,000 a month, according to her bills.
Her mother paid for two years at The Haven, until she needed skilled care from a nursing home. She died in 2017, a month before the long-term care insurance ran out, Liuzzo said.
Bill Lamb, executive director of N.C. nonprofit Friends of Residents in Long-Term Care, said residents with greater needs often cost facilities more money and it's fair to pass on those costs to consumers.
But facilities should provide total costs up front, Lamb said.
Often decisions to put a family member in assisted living facilities are made in the midst of a crisis — after a family member falls, for example.
“Those are the worst times in the world to make a decision,” he said.
Advocates for the elderly and scholars who study the industry say the drive for profits has harmed residents and their families.
Companies under intense pressure to produce revenue for investors have taken shortcuts with practices that impact care, including staffing and training, experts say.
In many cases, centers are accepting residents whose conditions require higher medical expertise than they can provide, said Catherine Hawes, a leading national expert on long-term care for the elderly.
Often the centers have no doctors on staff and sometimes no registered nurse on duty, Hawes said.
"Everyone agrees that the population moving into assisted living is more impaired than 20 or 30 years ago," she said. "The residents have higher needs, but there has been no change in staffing, staff training or staff supervision. This is a business model where there is a lot of living but not much assistance."
Hawes said relatively little research exists on how much money assisted living centers make. States report paying more than $10 billion a year in federal and state money for services for 330,000 Medicaid recipients, the federal Government Accountability Office reported.
However, assisted living centers typically serve wealthier people who can pay out of their own pocket or have long-term care insurance. Monthly fees average about $3,750 nationally and about $3,250 in North Carolina.
High-end centers can resemble hotels, with ice cream parlors and exercise rooms.
Hawes, who conducted one of the most extensive national studies of the industry, said her research has found assisted living companies expect to earn profit margins of 30 percent. Fortune 500 companies, by comparison, often earn profit margins in the single digits.
Lack of oversight
In the 1980s, Congress imposed new rules protecting nursing home patients, specifying which services must be provided.
But assisted living facilities have never received the same federal oversight, even though industry watchers predict increased demand because of an aging society and rising life expectancy.
Each state sets its own rules, which can vary widely.
A February report from the GAO found more than 20,000 serious health and safety violations in the first-ever national assessment of quality of care in assisted living centers.
The incidents included physical assaults, sexual abuse, unexplained deaths, unauthorized use of restraint and medication errors. Investigators concluded that gaping holes exist in the regulation of assisted living facilities, potentially jeopardizing the safety of patients.
The federal government lacks basic information about the care people get, even for patients who receive Medicaid, a joint federal and state health program for the poor, according to the report.
Democratic Sen. Elizabeth Warren of Massachusetts and other federal officials noted that 26 states could not tell investigators how many "critical" incidents occurred.
"Seniors and people with disabilities deserve to live safe, healthy and full lives," Warren has said. "But this report finds that thousands of seniors face health and safety risks in their assisted living facilities. ... We need to make sure we have the information to ensure accountability."
The assisted living industry opposes federal regulation. Reeves, of the assisted living trade group, said states have done a good job assessing their own specific needs.
Federal guidance can be less flexible, Reeves said. "We fall into a trap of wanting to make regulations equivalent to a nursing home," she said. "They are different setups."
In North Carolina, Stone is hoping to require the Medical Care Commission to create guidelines on how assisted living facilities can tie care changes to price increases.
He also wants to strengthen patient protections by lengthening the 30-day notice that facilities have to give before they discharge a patient to 60 days.
“These seniors are among the most vulnerable in our society, financially and due to their age,” Stone said. “We’ve got to have some protections on them and for them that allow them to live out their final years in comfort and in peace."